Qol-O-07 - The role of illness perception in patients with cutaneous T-cell lymphoma

Abstract

Illness perception describes patients' internal beliefs about their illness and their resulting psychosocial impact. This concept is important because it can give healthcare providers a tool to identify issues that may need to be addressed with their patients, but few studies have investigated illness perception in cutaneous T-cell lymphomas (CTCLs). CTCL is a chronic and often debilitating group of malignancies that can have an indolent but remitting course. Treatment options may also be burdensome to the patient; therefore, it is important to gain an understanding of CTCL patients' beliefs about their disease and how those beliefs impact their quality of life (QOL). Moreover, the COVID-19 pandemic offers a unique opportunity to investigate how significant disruptions in access to healthcare have impacted illness perception and QOL. The objectives of this study are to identify disease understanding in patients with CTCL, investigate the impact additional education modalities have on disease understanding, and whether disparities exist between specific groups of patients. This study also aims to determine how the COVID-19 pandemic impacted healthcare-related QOL in this population. CTCL patients of the Johns Hopkins Hospital above the age of 18 are recruited for this study. Patients are given an electronic survey containing the Illness Perception Questionnaire-Revised (IPQ-R), Skindex-29, FACT-G7, and selected questions based on the Household Pulse survey to assess COVID impact on QOL. Patients are then randomly selected to view an educational PowerPoint with educational material on CTCL, in addition to verbal education routinely given during their visit. Follow-up responses to these questions will be collected at 2 and 6 months after the initial survey. In this ongoing study, we anticipate a total sample size of 100 patients. Thus far, initial survey responses have been collected from 39 patients, 60% who identified as male and 40% who identified as female. 44% of patients identified as "White," 36% identified as "Black/African American," 10% as "Hispanic/Latino," 8% as "Asian," and 2% as "Other." 34% of patients were Stage 1B at time of survey. Most patients (22.99 + 4.2) perceived their diseases to be chronic but endorsed a high sense of personal control (21.61 + 4.2) and therapeutic control (18.98 + 2.6) over their conditions. Patients between 40-59 demonstrated higher disease consequence, as did patients within the Black/African American patient group. Illness coherence was also significantly higher for White patients when compared to Black/African American patients. Therefore, it appears that patients 40-59 may be more emotionally and practically affected by their disease, potentially because these patients are at the highest level of work and life productivity. Further, these results indicate that a gap may exist within the Black/African American community that may negatively affect these patients' QOL. The outcomes from additional initial and follow-up surveys from this ongoing study will provide insight into the use of additional educational modalities to improve patient understanding of CTCL, with the goal of addressing common patient misconceptions about the disease, improving educational resources, and identifying actionable paths to diminish the inequities identified by this study.